Edna at the Palace! - Unique - The Rare Chromosome Disorder ...

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FUNDRAISING and DONATIONS £100 each. It’s a great family day out and ideal if you work in a medium or large organisation where you can get the support from the company. These are the dates and locations: 10 May Lowestoft 12 September Cambridge 21 June Peterborough 27 September Bristol If you are interested and can guarantee a team then Unique will fund the cost of the boat £350, providing you can raise £2,000. Email julie@rarechromo.org. www.doitforcharity.com If you fancy something even more adventurous in the UK like, skydiving or a parachute jump then search the doitforcharity website or contact them on 020 7424 5533 and find your ideal challenge. www.charitychallenge.com If you are looking for a challenge around the rest of the world, in some of the most beautiful and spectacular locations then contact charity challenge for alternative ideas. Support Unique and you could win £25,000! Unique has signed up with Unity Lottery – a UK charity lottery with a difference. Not only do you, our supporters have the chance to win a prize including a £25,000 jackpot every week but we will receive 50p from every £1 entry played which will go direct to providing our services! We understand that Lotteries aren’t everyone’s cup of tea, but if you think your friends or family might be interested then do please pass on the information. How Unity Lottery works For just £1 per week you will be allocated with a six digit Unity Lottery number, which will remain yours for as long as you wish to keep playing. You can purchase more than one number if you wish. Every Saturday, the lucky winners are selected at random and prize cheques are issued and posted directly to you, so there is no need for you to claim. Winners have to match 3, 4, 5 or all 6 digits of the winning number in the correct place in the sequence. ■ 6 digits in the correct place wins £25,000 ■ 5 digits in the correct place wins £1,000 ■ 4 digits in the correct place wins £25 ■ 3 digits in the correct place wins £5 You have a 1 in 63 chance of winning a prize For more information on rules and how to play and how results are published, please visit www.unitylottery.co.uk. You must be 16 or over to enter and be resident in Great Britain. Play Unity Lottery for Unique today! Joining couldn’t be easier. You have the option to pay in two ways, either by direct debit or cheque. Just complete the application form on this page and post to Freepost, Unity Lottery, Barrow-In-Furness, LA14 2PE. Alternatively, visit www.unitylottery.co.uk/unique where you can download the form. Thanks for supporting Unique and good luck! www.rarechromo.org Page 16
again after a month of no food; it was a slow process. He ended up coming home with a feeding tube on March 20. The feeding tube was finally taken out on Easter Sunday. Since he’s been home he’s gone to the emergency room at least once a month. He was also diagnosed with a microduplication of chromosome 22q11.2. This is very rare so we don’t really know what’s going to happen. He had another heart surgery on August 29, 2008 that involved a heart catheter and a balloon to open up the narrowing in his aorta again. He’s got another check up in January… so we’ll see when his next surgery is going to be. Other than that he's doing just great. He’s so happy all the time. You can’t even tell that he’s sick. Sometimes it seems like it’s never going to end, always one thing after another. It’s very hard to see your little baby laying in a hospital bed with all those tubes, especially when we just took him in for a cold and found out he had to have heart surgery. But, we are very grateful and proud. He has a great team of doctors behind him. 49,XXXXY Joseph Shean: DOB 29/04/1994 Zena and Mike Shean Email: shean.family@virgin.net Joseph Shean – International Triathlete! We must boast about Joseph’s amazing achievement this year! Our triathlon club travelled to Austria, in July, to compete in a large international event. The children’s race on Saturday was in an Aquathlon format (swim 100m/run 900m). The youngsters were split into heats according to age and gender. Joseph’s younger sister Hannah was in an earlier race with five other team mates and had performed well. It was Joseph’s turn. Unfortunately he was the only boy from our club in this age group and we were worried that he might be overcome by the event. All instructions were spoken in German and parents were not allowed in the transition area, to help the children prepare the equipment, as they are in races at home. Anyway, it was Joseph’s turn. He looked very solemn as he awaited the order to walk along the wooden pier and then enter the deep water start via some metal steps. Did I forget to mention the swim was in a lake? The competitors entered the lake and had to tread water until the starting gun was fired. Joseph was last out after the one hundred metre swim to the shore. However, he was cheerful and managed to play the crowd with his waving and humour! He then started on the run, we had club members all around the course with drums, whistles, flags, pom-poms and cow bells, so he was not able to stop and walk at all! He was fantastic and the proud smile on his face when he finished and collected his medal was priceless. Joseph Shean – International Triathlete. Not something we ever imagined ourselves saying! The local triathlon community has always been very supportive of Joseph but his taking part in an event like this has always been unimaginable before! Although we are extremely proud of Joseph, we must also add that he actually took part in the age group a year younger than his chronological age – although confident he would have been able to complete the distance – he would have been a long way behind the other competitors and we do not think he would have enjoyed the event as much as he did. Anyway, best wishes to everyone at Unique. Well done Joseph! What an excellent effort! In Sympathy Gerard Garvey 08/10/1991 to 19/12/2008 Gerard’s Mum Mary has been a member of Unique for nearly as long as I have and I was desperately sad to hear that she has lost her precious boy. You know you are in our thoughts and prayers Mary. Bev Mary writes: Like many parents I have been meaning to write an update about Gerard for so long and just like everyone else our busy lives mean lots of things we mean to do get put off to another time. Now I am having to write that our precious boy Gerard passed away on the 19th December 2008. For a long time now Gerard’s health had been deteriorating, and although this was the case, he still remained one of the happiest boys you could ever meet, Gerard took a bad chest infection and went into Yorkhill Hospital on the 7/12/08. He went straight www.rarechromo.org to ICU and remained there for the next 11days. We had spoken to the doctors on several occasions and although they did everything they could, they told us Gerard was not going to survive. As we had been using Rachel House Children’s Hospice for many years, we asked if we could take Gerard there. The staff at ICU were wonderful and arranged this for us. We were very fortunate that Gerard was able to spend his last days in a place he loved, surrounded by family and staff who adored him. I cannot imagine what our lives are going to be like without him – he was the centre of our world. When Gerard was born we were told “take him home and love him, you won’t have him for long and he won’t be able to do anything”, well did he prove all the doctors wrong, he achieved so much in his 17 years and taught us so much. If it wasn’t for Gerard we would not have met most of the wonderful people we know and I would not have achieved all that I have. Gerard was an amazing young boy with a smile that would melt your heart and a wonderful sense of humour. We will miss him so much and we were blessed to be chosen as his family. Gage Aaron Wade March 8, 2008 – September 25, 2008 Gage’s Mum Jennifer writes very movingly to tell us of her brave little boy and his loss. Our hearts go out to you and your family Jennifer. The story of our son Gage is a brave, strong and unique one. It’s also heart wrenching and sad that no one will ever get to know Gage as we did. When I was 20 weeks pregnant with Gage, the doctors discovered by ultrasound that our baby boy had some severe medical conditions. We were told that our son had extra skin folds at the nape of his neck (similar to that of Downs Syndrome kids), his kidneys had severe reflux in both which would end up causing constant urinary tract infections, he had a 2 vessel umbilical cord instead of the typical 3 vessel cord and that he had a congenital heart defect although they could not tell which type of defect it was. We were told it Page 17
Page 1 and 2: RARE CHROMOSOME DISORDER SUPPORT GR
Page 3 and 4: Deletion (1)(p36.3) with Duplicatio
Page 5 and 6: second terrible “mouth to mouth
Page 7 and 8: Duplication (4)(q31.3qter) René Ro
Page 9 and 10: Eventually in October 2008 a whole
Page 11 and 12: aising awareness and donating monie
Page 13 and 14: 22q13 Deletion UK Family Day Saturd
Page 15: nd DONATIONS GAPS Panto You may rem
Page 19 and 20: Collecting my MBE Edna Knight, Foun
Page 21 and 22: ehaviour Anxiety and Stress Coping
Page 23 and 24: carers Caring with Confidence Carin
Page 25 and 26: special needs continued ■ communi
Page 27 and 28: special needs continued Valuing peo

Edna at the Palace! - Unique - The Rare Chromosome Disorder ...

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